Category Archives: MS related

MS so effing sucks

The Curmudgeon did well for the past week or two. Then yesterday it all fell apart.

I had to get help to get him off the floor and into bed. He’d pissed his bed and clothes. So I had to strip him of his wet clothes, dress him, and wash all the bedding and his clothes. I did this after I hurt my back again trying to get him up.

He’s been out of it all freaking day.

Therefore, I had to deal with the guy that came to clean the furnace, Something he usually does, even if it is just sitting on the stairs while the guy works.

The Curmudgeon doesn’t want me here. He wants a mother, I am not his mother, I am no one’s mother. I do not have a nurturing spirit, that died with the 8th miscarriage.

All the wine or martinis in the world aren’t enough to make dealing with this, in any way, easy.

“The lifetime divorce rate is roughly 50 percent; for chronically ill people, the rate is 75 percent.” Are where the statistics stand today.

Am I surprised? No, not one bit. I think about it EVERY day.

However, because I quit jobs so many times to take care of my sister when she had cancer, and because now I’m over 60 years of age and out of work for so long, I am unemployable.

In other words, no one wants to hire me because I’m too fucking old.

I have no way to leave and no place to go. I feel as though I have a gun to my head making me stay. I am beyond exhausted both physically and mentally.

I have no joy.

last fuck

He’s getting snazzy now

So The Curmudgeon’s new rollator/transfer chair arrived today. Gee, that was quick! Thank you Overstock.com!

It is simple and quick to convert it from rollator to transfer chair.

When in transfer chair form, I wish it rolled over floor transition strips better.

Now all I need to do is get his Mom’s old, heavy, clumsy rollator out of here, we don’t have space for three.

Duet-Transport-Wheelchair-Rollator-Walker

Duet-Transport-Wheelchair-Rollator-Walker pic 2

No, the MS society didn’t pay for it…or any of the various walkers he has

I ordered The Curmudgeon a new rollator. I found one that converts to a transfer chair. It will come in handy when he falls and I have to get him from one room to the next.

A Duet Transport Wheelchair Rollator Walker.

Duet-Transport-Wheelchair-Rollator-Walker

Duet-Transport-Wheelchair-Rollator-Walker pic 2I hope it makes things a little easier. His older walker I’ll move upstairs and I’ll take the rollator from up there (it’s too heavy for me to easily carry down the porch stairs and lift into car) over to Good Shepherd and donate it. That way someone who really needs a rollator will have a good one.

This way we’ll still have two lightweight enough walkers in the house, upstairs and down, and the new one I will use as a transport chair for him when necessary.

It’s sad that this has to be his birthday gift this year.

It’s never cheap living with this disease. Between his medications and specialized equipment he needs, we’re never out of the hole.

Ew, it’s cold outside.

Ah yes, wintertime! Where you are trapped in a small area with loved ones who, by the end of the snowfall, (yay, so far we’ve had none but we have had lots of rain) …oh yeah, where was I? Who, by the end of the snowfall and digging out, you wish you were in Donner pass and they were dinner.

Wintertime, where young, strong idiots comment about older folks complaining they need help to shovel their walks and the older folks should get over it and do the work. Excuse me?!

I, for one, was ordered by my cardiologist to never shovel snow again if I wanted to stay alive. Secondly, my husband has secondary progressive MS and can barely stand much less walk and shovel snow. And we should ‘get over it and get to work.’

He should be grateful he’s young and strong and should get over himself because he’s at about the same age my husband was when he was first diagnosed with MS.

Karma is a bitch and she loves slapping arrogant people upside the head.

the right to be stupid

Here we go again

I woke to find him on the living room floor. Out of it.

Called for an ambulance. Again.

They admitted him to the hospital. Again.

High fever. Running a ton of tests that even included a spinal tap. They have no idea. AGAIN.

WTand F

Stress? Really?

12/10/15 and my blood pressure is 129/72.

The day began with me having to drag one of my sweet neighbors over to get The Curmudgeon from the floor up into his chair. Not walking well? You think?

Did he make it to his speech therapy at 3:30 p.m.? If you guessed no, you guessed right.

I took all his medications away and now am doling them out rather than trusting him to take him as he should.

I have a feeling he was waking up, thinking it was morning, he’d take his medications, go back to sleep, wake, repeat.

I can’t prove it, but from now on he will get his medications from me and not self-medicate.

Stress? Um…yeah.

HPIM4441

Welcome to my hell

12/9/15 blood pressure 120/67.

I just spent the entire night and day with a crazed, six-foot-tall, three-year old, otherwise known as The Curmudgeon. Also known as a night and day in hell. He refused to let me call for an ambulance and expects me to not be terrified with him acting like a lunatic.

If I had a source of income, I’d be outta here tonight. However, I quit too many jobs to help family out for anyone to even risk hiring me at my age. Forty hours short of getting any SS of my own.

the scream

Bad day in blood pressure town

Blood pressure on 12/5/15 is 148/71.

He started the day scaring the crap out of me when I found him on the floor of the bathroom. Speech slurred…etc. I came very close to calling for an ambulance again. But he protested mightily.

Got my sweet, sweet neighbors to get him up and back into his bed.

Spent the rest of the day running upstairs checking on him and asking him if he thought maybe it was a good idea to go back to the hospital. His hostility evident, I backed down and let him sleep until the next time I checked on him.

If he doesn’t want help what else am I supposed to do?

noon on the beachInhale….exhale….look at beach pictures…

 

Off schedule is out of kilter

It seems that The Curmudgeon is falling into the routines at the rehab hospital so well that he gets a bit peeved when one of the therapies throws another one off schedule.

I’ve been down with a creeping crud and dare not take it out there with so many compromised patients. So  he’s taken to calling me twice a day.

He gives me the low down on which nurse is driving him bonkers and who has visited or called him. He has his cell phone with him. Therefore, if any of his friends are reading this–you can call him on it. If he’s in therapy, he’ll call you back.

If there are no set backs and things continue to go smoothly, he may be home a week from Thursday.

HPIM4093We iz waiting for himz.

 

I knew he needed a brace

Finally, the doctor at Good Shepherd Rehab hospital tried a brace on The Curmudgeon to keep him from dragging his foot. Now they are fitting him for one after seeing how much it helped.

I’ve been saying for years I thought he needed one to help him walk better. All one has to do is look at the wear and tear on his shoe to see the need. But who am I other than just his wife who doesn’t have an armload of medical degrees? I couldn’t possibly know these things. Right?

bird is flipped

 

Very good news

So, if all goes well, The Curmudgeon should be in Good Shepherd rehab hospital by late afternoon.

How long he’ll be there, I have no idea.

I do hope that they can get him back to where he can take care of himself as he was doing before all this.

I truly fear that we need to sell this house and move to where we can manage more easily. However, to do that we have plenty of work that needs completion to get the house up to where we can sell it.

the scream

He’s starting to sound like his old self again

The Curmudgeon sounds like himself again. He called me a couple of times yesterday. He’s gone from death’s door to almost back.

I did not hear the weak old man voice rambling on about nonsense. I heard his old self.

Monday the doctors plan to redo all the paperwork to get him in Good Shepherd rehab. Seems that even though the insurance company had authorized him going there, when he had that set-back this past week, then they have to start it all over again.

Keep your fingers crossed!

I will keep on watching for him!

HPIM4819